LEOPARD-FA is a research study that is being conducted by Dr. Chad Heatwole from the University of Rochester Department of Neurology in Rochester, New York, in the United States. This study utilizes surveys, so no office visits are required.
The purpose of this study is to assess the ability of two new surveys to:
- Measure patient-relevant changes in disease burden over time
FA-HI (Friedreich Ataxia-Health Index)
- Measure caregiver-reported changes in disease burden over time
FACR-HI (Friedreich Ataxia Caregiver Reported-Health Index)
Who can participate:
- Individuals with FA ages 8 and older
- Individuals who are caregivers, ages 18 or older, for individuals, ages 5-18, with FA.
Minors, ages 8-17 will be asked to read an information letter, and their parent/guardian will also be asked to read an information letter. The parent/guardian must provide permission and the minor must provide assent online to participate. The parent/guardian may also need to help the minor in understanding and/or answering survey questions. The parent/guardian may choose to additionally participate in the caregiver study, in which the purpose is to assess the Friedreich’s Ataxia Caregiver-Health Index (FACR-HI).
How to participate:
Individuals with FA ages 18 and older may click the link here to get started: FA-HI survey
Parents/guardians of individuals with FA ages 5-18 may click the link here to get started: FACR-HI survey
Watch the FARA Minutes of Science video on the LEOPARD-FA study here
Watch Anika Varma present in the FARA Flash Talk series on the LEOPARD-FA study here
Any questions or comments can be directed to the study coordinator:
Anyone considering participating in a clinical trial should discuss the matter with his or her physician. FARA does not endorse or recommend any particular studies.